Talking about endometriosis

by Marc Laufer, MD, Endozone Advisory Board member, Chief of Gynecology; Children's Hospital Boston; Associate Professor of Obstetrics, Gynecology and Reproductive Biology

What is endometriosis?
Endometriosis is a condition that occurs when tissue similar to the lining of the uterus is found outside its normal location. Common locations of these endometrial implants, or lesions, include the ovaries, fallopian tubes, ligaments that support the uterus, and tissue covering the bladder and rectum. The location of the endometrial implants, and the way in which the lesions affect the pelvic organs, contributes to the symptoms adolescent and adult women may have. Some teens with a lot of lesions have very little pain, while others with a small amount have severe pain.

What causes endometriosis?
Although we know that some young women may be slightly more likely to develop endometriosis because female relatives have it, the truth is, we don't know the cause of this disease. Any woman, anywhere, can get endometriosis.

What symptoms are associated with endometriosis?
The most common symptoms include occasional or constant pelvic pain and/or severe period cramps—often referred to as chronic pelvic pain. Pain can occur before, during or after a period and may be cyclic or acyclic. Teens may experience pain at rest, with exercise, sex or after a pelvic exam. Painful or frequent urination, diarrhea or constipation may accompany the pelvic pain, confusing the diagnosis of endometriosis with inflammatory bowel disease, recurrent urinary tract infection, appendicitis, or pelvic inflammatory disease.

How is endometriosis diagnosed?
The only way to be completely sure that the problem is endometriosis is to have a laparoscopy—a minimally invasive, outpatient surgery to examine the pelvic organs. Blood tests, cultures to check for infection, an ultrasound or an MRI may help rule out other diagnoses prior to laparoscopy. It is important to refer young women to gynecologists who specialize in treating teens with endometriosis as it can be more challenging to recognize endometriosis in teens than adult women.

How is endometriosis treated?
Although we can't cure endometriosis, there are many options for treating symptoms. The goals are to relieve pain, control the progression of the endometriosis and preserve fertility. Treatment can make a big difference in improving the quality of a young woman's life, and early treatment may preserve a woman's fertility. We recommend continuous treatment through child bearing years or until desired family size is reached.

Some common treatment methods include:

• Over-the-counter pain relievers, such as aspirin, acetaminophen, ibuprofen and naproxen sodium can offer relief for some. Others require prescription drugs.

• Oral contraceptives taken continuously relieve symptoms in eight out of 10 patients. GnRH agonists (gonadotropin releasing hormone drugs), such as Lupron, temporarily stop periods by lowering estrogen levels.

• During laparoscopy, doctors can use special instruments to laser or cauterize the endometriosis. Many teens find relief from symptoms after going through this procedure, although over time, some may experience pain again.

• Acupuncture, herbal remedies, homeopathy and healing touch are a few alternatives we've seen grow in popularity. We've also found many of these therapies to be effective. We encourage patients to speak with their primary care doctor or gynecologist before pursuing alternative treatments, as research studies are limited and not every alternative approach has been proven to be safe and effective.

• Eating well and getting enough rest helps the body to manage pain. Exercise often helps to relieve or lessen pelvic pain and menstrual cramps. Practicing relaxation techniques, such as yoga and meditation, help ease pain too.

• Many centers work closely with other health care providers in programs that provide treatment and support for acute and chronic pain. Following an evaluation, services such as biofeedback, physical therapy, TENS (transcutaneous electrical stimulation) and exercise programs, may be offered.

Is endometriosis being researched?
Yes. A variety of research is underway around the world. At Children's, we've just finished collecting data on a blood test for endometriosis that may one day provide a less invasive way to diagnose it. We are also studying the way complementary and alternative therapies, such as acupuncture, may help manage symptoms alone or in conjunction with other forms of treatment.

Where can young women or parents find more information?
The Center for Young Women's Health is a great resource for young women, parents and health professionals. Their Web site (www.youngwomenshealth.org) includes pages on basic health, nutrition and fitness, emotional health, sexuality and reproductive health. Common questions about endometriosis are answered in sections specific to teens, parents and health professionals. The Endometriosis Association (www.endometriosisassn.org) is another good resource for more information on endometriosis.

Surgeon Marc Laufer, MD is chief of the Division of Gynecology, and co-director of the Center for Young Women's Health.

Reprinted with permission. Pediatric Views February 2006. A publication for pediatric caregivers from Children's Hospital Boston.

©2006 Children's Hospital Boston. All rights reserved.